23andMe to share customer gene data with GlaxoSmithKline for $300M

I don't believe myself to have been duped. I've made concessions based on priorities. Would I prefer this work be done, publicly funded, by the NIH and other non-profit researchers? Absolutely. Am I willing to wait for perfection? Absolutely not. Federal law currently protects your DNA data from employers and insurance companies. If you find that to be insufficient, run for office.

Disclaimer: Interviewed and was offered a role at 23andme a lifetime ago (2011), no other affiliation besides being a satisfied customer.

If you are covered under 42 CFR Part 2, then it would not be allowed because the patient has to give consent to ALL parties.

Not only that, this is one of the benevolent aspects of 23&Me that people saw coming. It's only a matter of time before this information trickles to insurance companies.

> A 23andMe spokesperson told TIME that data privacy is a “top priority” for the company, emphasizing that customer data isn’t used in research without consent, and that GlaxoSmithKline will only receive “summary statistics from analyses 23andMe conducts so that no single individual can be identified.”

Also, if I buy some shares in Amazon I don't get have all their client data.

I'm going to have to investigate this more thoroughly. If it's true, then I'll delete my data at 23&me (and hope that data deletion actually does what it says).

(b) To address that issue, I vote for politicians who advocate for radically restructuring how healthcare is paid for in the US to minimize incentives to gouge unlucky individuals

Novartis recently won approval for a cure to a rare genetic disorder, priced at two million dollars: https://www.reuters.com/article/us-novartis-genetherapy/nova...

> In the United Kingdom, it is generally held that an organisation holding a 'controlling stake' in a company (a holding of over 51% of the stock) is in effect the de facto parent company of the firm, having overriding material influence over the held company's operations, even if no formal full takeover has been enacted.

HINTS: GSK (UK based) is not one of them.

https://www.gsk.com/media/5349/annual-report-2018.pdf

> 23andMe in which the Group holds 14.5%.

Is there something specifically missing from that? it seems like you're suggesting they are doing somethign which is not covered here, or they're trying to be "sneaky", but I don't think that's the case. They have always made it fairly clear what the long game is, and "collect genetic information and share it with legitimate researchers to enable drug discovery" was a major part of it.

I see a lot of folks suggesting 23&Me is being sneaky, or underhanded, or going out of its way to cloak these sorts of exchanges. I do not agree with those interpretations.

Note: I am generally sympathetic to the idea of widely sharing genomic information and believe that good consent forms are transparent. This form is closer to what I'd like to see from a wider range of less ethical organizations.

GSK is not a "parent company". It is a minor investor. This also doesn't give them some ability to demand access.

0. https://www.drugcostfacts.org/public-vs-private-drug-funding

No...? Precluding companies from coming up with cures for diseases based on researching this data seems to defeat one of the major points of medical research.

That is not the same thing as selling data to third-parties. Especially considering that 23andMe asks users questions and then shows results based on correlations, it's too easy for users to understand "opting in for health research" as research being done by 23andMe and not by a third-party.

Or when signing up for health insurance a policy chain down the road. At that point the new treatment better be cheap enough to pay out of pocket...

But seriously, how can you in good conscious claim this all being willingly when it's very nature shares info about other people as well. This feels like unaware people giving Facebook access to their phone book all over again, thus giving away all kinds of info about me. No, I don't want FB creating shadow profiles about me and certainly wasn't asked.

Can we please find a way to not create piles of data about third parties? Since, if history has shown one thing, them being used against me is just a matter of time. Or, at least have in place strong protections by e.g. regulations?

And it's unlikely it would be passed as a law, because (currently) most people favor privacy for their genomic information.

Personally, I can see the value in allowing health insurance to access genomic information. Assuming it truly correlates with health outcomes, the data would be valuable in accurately personalizing contracts. I believe other indicators are already used.

When I bought my term life insurance policy they took a blood sample, as they have for decades. I don't know if they did any genetic screening, but if they didn't I presume it's just because the cost+benefit wasn't there yet. Considering that I could do whole genome sequencing today for a couple thousand dollars and game the system, that bodes well for the future as it suggests the viability of tiered screening and risk management strategies that smooth out the costs for most people in the face of increasing self-selection behaviors as genome sequencing costs decline for insurer and insured.

BTW, regardless of whether a life insurer does genetic screening, if you procure a policy knowing of a substantial risk of genetic illness without disclosing it that would violate the terms of most policies and may even rise to the level of insurance fraud.[1] We may see laws limiting the types of affirmative screening that can be done by insurers, but I could never see a law limiting such contractual terms and general background rules as it would certainly destroy the market for life insurance.

[1] Thus, if you want both life or disability insurance and genetic tests, the legally and ethically correct thing to do is buy the policy first and then do the genetic tests afterwards. It makes sense to buy life and disability insurance at a relatively young age, anyhow, like in your late twenties or early thirties where your income has [hopefully] already risen to a level where you can buy a multi-million dollar policy without a penalty--from a risk management perspective insurers can only offer the best rates when there's a correspondence between the policy amount and existing, proven income. By contrast, it makes less sense to do genetic testing until you have reason to, like in middle age. That's fortuitous and one reason why we should be less concerned about the effect of voluntary genetic testing and disclosure rules regarding life insurance. (Obviously affirmative genetic screening is a different problem.)

Unless somehow it were possible to gain a monopoly on curing people, which is plausible but fundamentally not the responsibility of the researchers.

It doesn't matter if you can afford everything in the world if the thing you need is never developed in the first place.

Some of the treatments me and my family have had were not available in Europe, Canada and other universal healthcare countries at any price. I would have probably lost almost two decades of time that I got to spend with my mother because she got treatment in the US the first time she got cancer. She was British and at the time the NHS had the 2nd worst success rates for cancer of all OECD countries and the US had the highest success rates.

One kind of insulin can be bought for ~$25 at Walmart.

Now, this means that you have to monitor you sugar levels, have a restrictive diet, etc. All things that are very restrictive but better than dying that people did when insulin treatment was first being developed.

Now we have newer, reformulated insulin that allows for a more permissive lifestyle. That is expensive.

Should the newer stuff be cheaper? It certainly allows for a greater QOL and took time and money to research.

A patient has no obligation to adhere to HIPAA rules for their own PHI, if that is what you meant.

In my medical work, a patient directed request is one where a patient has authorized the transfer or release of their PHI. That transfer/release is absolutely covered by HIPAA.

However, if you are a covered entity as defined by HIPAA, you are required to be compliant to the privacy and security rules set forth in HIPAA for PHI data.